The Other Side of Mobility

Drinking beer before playing hockey is not such a good idea.

OUCH.

My neck, shoulder, and sit-bone are all sore from multiple falls last night. I skated into a man twice my size and fell hard on my left shoulder; then the invisible player tripped me as I skated my hardest towards the net --you know the one who appears when no one is covering you-- and I landed on my butt, slid into the boards, hit my head, AND bit my tongue.

I also missed about twenty opportunities to score. I either lost the puck in my feet or missed the goal by a foot.

I'm always a little bit out of control and the slower reflexes certainly didn't help.

CRASH.

Elias loves that word. He loves all onomotopia words or words that sound like they mean: POP...BANG...ZIP...CRUNCH...KAPOW...WHACK.

And for a boy who is challenged by mobility he loves anything that moves. And moving. He is never still. Never. He may be a three year old boy who does not yet walk, who can not stand without holding on to something, but this description alone does not capture Elias.

In fact you can't capture him.

And sadly, his own Mama gets trapped by test scores and developmental milestones and as much as she tries to resist these graphs and charts,  they sometimes paint the picture for her-- even though they barely coat the surface.

Do not even come close to touching the depth.

Besides all of Elias's fabulous character traits--his flexibility, sociability, adaptability, lovibility-- he is a physically -impaired little boy who wants nothing more than to be physical. He full-on cried today--something he rarely does, REALLY-- because Mommy was on the ladder and he wanted to climb it AGAIN. He LOVES climbing.  Up and down stairs, ramps, couches, beds, and basically anything that appears climbable.

Mobility may be his greatest challenge--he is in the bottom 1% for gross motor--but it is also his greatest motivation.

He is my son. And Nick's.

His parents fell in love on top of a mountain that they traversed without a trail. It makes sense that he loves to move. That he loves the adrenaline rush of activities that push him to the edge. That he falls down and gets up again and again and again.

He is one of the toughest kids I know. Free falling backwards and cracking the back of his head on the corner of a shelf without a single tear. Not once but often. Every day. He falls and falls. And rises saying, "OK, Elias, OK."

And god, yes, he is OK.

More than OK. And if only health insurance and school and medical visits and society and my own desire to be perfect didn't compare him to other boxes I would never have to be so focused on all that he can't do.

Elias can count to ten. He cooks make believe pie and feeds it to me. He can turn his walker in circles and cruise along walls. He tells us when he is hungry, when he is ready for bed.

He knows his mama is going to play hockey when she brings her stinky bag upstairs from the basement. He says, "Someday Elias play hockey." And who am I to say he won't?

Who am I to let my own fears limit Elias?

It warmed up to about twenty degrees today, so we walked to a nearby park to play outside:

Spring is coming-- which means anything is possible.

Comments

[Sara]

OUCH on the hockey splats. Save the beer for after the games/practice ;)

You know what's funny? I read your stories and see your pictures and ALL I can see is how amazingly he is doing. I can't help but compare him to Toby's development - Elias is much father ahead of Tobes mobility-wise. Which I know is irrational and unfair, they are different kids etc. And there are areas where Toby doesn't have Elias' challenges (vision stuff certainly). But all I see is how fabulously Elias is doing, and how much all of his "keep moving and climbing" traits are going to help him get where he needs to go.

I also see a lot of similarities - they're both smart, funny, charming blondie boys who will wrap you around their finger in about two seconds.

We should share sports-for-those-with-disabilities ideas and resources sometime. Google the Hase "trets" bicycle - it's a recumbant tandem bike trailer - it attaches to another bike - and Toby gets to *pedal*. Also on my list of things to get is a "kick sled" - it's not as active-participatory for Toby as the Trets bike, but he would adore going fast in the snow. SABAH is a skating program for kids with disabilities - I dunno if there's a chapter in your area.

Great pictures - I love the ones of you looking down through the climbing thing and him up.

[Kris H.]

GO ELIAS GO!!!

Oh, if Elias likes words that sound like they mean, he would love the Froggy books...they are full of these words! Check em out...

http://us.penguingroup.com/static/packages/us/yreaders/froggy/books.html

[Kyla]

Ouch! Sounds like your hockey game went "smashingly". *lol*

Elias is an amazing little boy, Christy. Even if it takes a bit longer, I really believe that those things he SO desires to do, he will. He is a determined little guy and I truly, truly think he will do those things.

Although we are always glad to see a new milestone for KayTar, we've kind of tossed the book of norms out the window. We look at it like she's rewriting the way things are supposed to be and she's doing great with it.

[Sonja]

Yes. Yes it is possible.

[Patricia]

I know "normal" 3 year olds that weren't able to count to 10! Elias is really amazing and he sounds like one verbal boy. He will do fine.

[Heather]

Our PT says that kids who can't motivate the same way as other kids still crave motion-in fact, more than the kids that get the motion through walking and running. That's why they climb everything (if they have the upper body strength). Craving the motion is what led Dev to ditch his walker. He "walked" for several months by pushing a kid sized rocking chair in front of him. Encourage every bit of motion that Elias can do on his own. My Mom brought a plastic slide and fort combo into the living room so Dev could keep active during the winter. Kids are inventive, they'll find a way to satisfy that craving for motion. I think that is why some people are race car drivers, extreme skiers, and other crazy stuff.

[paige]

Go Elias!

He's got some good role models for his determination and strength.

Pat yourselves on the back. You are doing a good job, Christy and Nick.

[jeanie]

Thanks - you put it all into perspective yet again!

[Mae Ann]

Hi Christy,
I can remember one of Elias' first phrases. He'd scoot away from us in the blink of an eye repeating the phrase "gotta go, gotta go." And he did have to go, move around, explore all that was in his reach. All of his movement and yes his "crashes" brought him language to talk about. I'd say that "he has spirit!"